So, as the little reader board on my site here has been teasing you about regarding the “first line of your story”, I’m finally able to write a little more about what I mean by that.

For years, I have explored the new, and sometimes renewed, methods by which we try to make some sense or gain some control over our lives. What I’ve learned over time and have expressed here constantly, is that each experience with lupus or other chronic conditions are uniquely our own. Although there is a benefit to building a network or personal support community to help us weather the daily challenges, we are always on our own in trying to make our lives work for us personally.

When I have the opportunity to facilitate health-focused brainstorming and problem solving sessions for individuals and/or groups, the words “isolation”, “fear”, “uncertainty”, “frustration” and “pain” are the most frequent words I write on the board. When I facilitate Wellness Discovery Sessions, those same words come up time and time again through images. No matter what the health challenge (and not necessarily limited to the Portland,OR area), there appears to be dark clouds hanging over each of us every day…and not just threatening rain.

Having worked with organizations and non-profits over many years, the mission statement is very important for those working within the organization itself and for those of us in the community who are considering supporting their efforts with our limited time, energy and money. I always encourage careful consideration when donating anything to a collective group claiming to offer “support” for health or “wellness” needs. The best way to determine their integrity is to carefully study what they say, do and who they team up with, as it all relates to their professed mission statement. I have seen my share of “non-profits” come and go, that have focused less on service and more on marketing or “piggy-backing” on other people’s work. They eventually fizzle due to revenue or lack of community response and leave those of us still needing health support high and dry.

So, how do these organizations or non-profits know what to offer the community they serve? Social media is a great way to learn through lurking and paying attention to themes. And, as we all know about social media, there are a lot of people out there giving opinions, medical advice, selling products, venting frustration, judging each other, or connecting with like-minded individuals all over the world.

Organizations and health-focused non-profits are only going to work financially if they ‘market’ themselves in a way that either seems to work for other organizations( similar events and topics) or by using the ‘lingo’ and themes as their ‘key words’ to get our attention. These keywords and themes are then used in their marketing materials to draw us in – as well as our wallet.

Now, I want to return to those keywords I pick up at most of my facilitations with individuals living with chronic health challenges such as lupus.

Isolation

Fear

Uncertainty

Frustration

Pain

If organizations and non-profits are marketing wisely, they will use both these and the antonyms (opposite of these words) to get our attention. But, are these relevant to us regarding what we truly need in support or are they simply expressions of the feelings that represent our unmet needs? Do we want people to support us in feeling better or do we want people to offer us viable, relevant options to care for ourselves?

Initially, I thought about using the ‘first line of the story’ activity to create as a sort of collective affirmation on we want to make for 2012. A type of working mission statement, if you will, that is broad enough to cover everyone’s experience in some way, but is still a statement that can help lead our support need requests toward building useful resources. We hear calls to support research in finding a cure. We hear about advocacy opportunities in supporting legislation. We are always hearing from people asking for money to support their efforts. Those bases are covered and many are important for us to take part in for ANY health treatment progress to be made. But, for you personally – what is your call for?

Maybe moving away from a collective activity and starting with individually exploring key words that catch our eye throughout the day is the first step. What words support our sense of self-determination, rather than our need? Are those feelings and needs burdening us because we choose that or are we responding emotionally to ‘outside’ forces? Or, just as valuable and necessary, are these needs and feelings truly relevant to us, waiting to be addressed?

What would you want to see in a brochure? What would you be interested in reading through the many social media platforms – Facebook, Twitter, Tumbler, Ning communities, and so forth? Do these keywords describe your life? Are these keywords what you are looking for from an organization or non-profit? Are you willing to support them in perpetuating these keywords or would you prefer to have them help you redefine them?

Just as a note, and an important one: I hear a lot of positive things come out of facilitation, too. I hear amazing strength, courage, self-determination, hope, joy, community, potential,…and so on.

That is the main reason I do facilitation~ what I learn from listening to the stories of others inspire me. What comes from the process or dialogues during facilitation astounds me and motivates me to create as many opportunities to bring people together to brainstorm, problem solve and build something as possible. Yet, strengths don’t imply ‘need’ and, although there are plenty of non-profits out there that offer services focusing on needs, usually the marketing focus is more on these ‘need-focused’ keywords that keep their mission statement (and their organization) operating.

I invite you to take a minute or two and join me in thinking about keywords that you would put into a personal mission statement. Brochures and fancy websites aside, building on your own personal ‘marketing’ will make finding those non-profits and organizations that truly support you in your wellness much easier~ while offering you an individually stronger (and longer-lasting) impact on your own life.

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Local Wellness Education

Living Well With Chronic Conditions Workshop Dates for Oregon~y también tomar el control de sus talleres de salud en español

Living Well Education in Central Oregon

Oregon Support & Meet-up Group Announcements

Molly's Fund Lupus Support Group - second Saturday of every month (next meeting is January 10th), 11AM at the First Congregational Church of Christ, 1126 SW Park Ave. There is more information about their other support resources on their website.

The next Portland area Scleroderma support group meeting is January 10th and will feature a presentation from Dr. Katherine Leonard, a licensed psychologist, on facing life transitions . Meetings are held from 10am-Noon, at Good Samaritan Hospital's Wistar Room. Visit their website by clicking their logo.

Bend's Central Oregon Scleroderma Support Group meeting dates will be listed here soon. They meet on the 2nd floor of the Bend Memorial Clinic's Physician's Lounge.1501 N.E. Medical Center Dr.